Epidemic in the making 

Hidden victims

AIDS on the rise among older women

Forty-eight-year-old Janet took good care of herself, participating diligently in her HMO's wellness program, eating right and exercising. And she died of complications caused by an undiagnosed HIV infection.

"Janet (not her real name) was a straight arrow," recalls Dr. Paula Schuman, an AIDS researcher and associate professor at Wayne State University's Division of Infectious Disease at the School of Medicine in Michigan.

"She was a divorced mother of two grown children and had two sexual partners, her ex and the man who infected her," says Schuman, who became familiar with Janet's case through an ongoing research project.

"No one at the HMO ever thought to check Janet. She had been married, was not a drug addict, a prostitute, had no history of multiple sex partners and was working. She was a solid citizen," Schuman recalls.

And yet, Janet was a member of the fastest-growing group with HIV/AIDS: women.

Between 1991 and 1995, there was a 63 percent increase nationally in women diagnosed with AIDS, according to the Centers for Disease Control and Prevention (CDC). AIDS claimed the lives of 7,300 women between 1991 and 1996, and some 150,000 women now have the HIV virus that can lead to AIDS.

Across the United States, women account for 20 percent of all adults with AIDS -- as compared with 7 percent in 1982. Historically, half of the diagnoses of AIDS among women have come at age 35 or older; women such as Janet are increasingly among these ranks.

In Montana, however, the numbers tell a much different story. According the state's figures as of the end of last year, there have been only 34 reported cases in women in the last 12 years. Twenty-three of those cases came from heterosexual contact, two from intravenous drug use, and four from blood transfusions. The remaining five cases are still under investigation, but according to Jim Murphy, the state's AIDS Project surveillance coordinator, most of those are strongly suspected of being from heterosexual contact.

"These numbers haven't really changed," says Murphy. "And in a place like Montana they probably won't. Women don't stand out as any significant trend. They always account for just about 10 percent."

Murphy says that the statistical increase of female AIDS cases nationally has been affected by a few key states, like California and New York, that have large metropolitan areas.

Although the largest percentage of cases in the state are centered around the bigger cities (Missoula, Yellowstone and Cascade counties, in particular), AIDS cases still fall along traditional lines, Murphy says: The abundance of patients are men who have sex with other men, use intravenous drugs or both.

But nationally, researchers like Schuman believe the number of women -- especially older women -- diagnosed as HIV-positive will continue to increase.

Schuman, who directs the Detroit branch of the HIV Epidemiology Research (HER) Study -- the first federally funded, multisite study of HIV infection in women -- has treated only women for the last decade. During this time she has seen a marked increase in the number of older women with HIV/AIDS, and reports seeing middle-aged, HIV-positive women with mothers, aunts and cousins who are all positive.

Federal statistics show the same increase: In 1986, 102 new cases of AIDS in women over the age of 60 were reported to the CDC. Last year the number was 305. It may seem like a small figure, but experts say that, for various reasons, the count is far below the actual number of cases.

"The problems in this age group are underestimated," Schuman says. One of the main problems is that doctors consistently miss the HIV diagnosis in older women. Sometimes symptoms can be mistaken for common illnesses, and other times the possibility of HIV infection is dismissed completely.

That's partly because a decade ago HIV among the elderly was mainly the result of blood transfusions; today 69 percent of cases are attributed to heterosexual contact.

This risk is especially high among older inner-city women whose partners are known or occasional drug users. The men themselves may be unaware they have HIV. And nobody expects older women to become HIV-positive: Society often has a hard time admitting they even have sex.

In Janet's case, the virus went undetected until she got "wildly metastatic" breast cancer.

"During the evaluation for a bone marrow transplant, Janet was found to be HIV-positive. She had likely been positive for 10 years," Schuman says. "At that point aggressive chemotherapy and HIV therapy began, however due in part to the complexities of treating cancer in HIV-positive patients, she died within three months."

The older women get, the worse their chances of surviving HIV-related illness. Forty-three percent of women over 65 diagnosed with AIDS die within one month, often because they are beyond the point when early treatment would have been effective.

Schuman tells of another patient, an 80-year-old great-grandmother who suffered a heart attack. Doctors treated her heart, but were unaware of the significance of abnormalities in her white blood-cell count.

When the woman became progressively confused, doctors chalked it up to dementia. She became nonresponsive, then comatose.

Eventually it was discovered that the woman had AIDS, which she got from her 74-year-old boyfriend. Her dementia was due to neurological manifestation of AIDS -- and early treatment could have helped keep her healthy.

Audrey, a 54-year-old Detroit grandmother, has had several bad asthma attacks since she was infected with HIV in 1990. She usually says she was infected by her boyfriend, an IV drug user, because it's "easier" for people to believe, even though she had also had blood transfusions and worked in the health care profession.

In spite of the HIV, Audrey sees herself as "blessed" because she has a home and is well enough to work, raise three of her nine grandchildren and has "caring" doctors that allow her to take an active role in her treatment.

She says she dreams of having an apartment building where HIV-positive women can live independently and not have to worry about "getting sick, or that they'll take my kids."

"We just want to be treated normal. We don't have a plague," she says, adding, "Hugs really help."

Independent reporter Tim Westby contributed to this article.

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